Transform Patients to Partners by Embracing Patient Insights to Optimize R&D and Patient-Centric Drug Development

In an era of increased complexity and escalating costs of clinical research, a focus on personalized medicine and patient empowerment, drug development is undergoing a metamorphosis. The Healthcare industry today is undergoing a major facelift. All stakeholders are looking for better ways to partner together to find effective and innovative ways to accelerate drug development. These stakeholders must work together led by patient needs. Companies are continuously looking to adopt and implement effective and innovative ways to accelerate drug launches in the market. It is critical for manufacturers to view patients as informed collaborators whose participation is core to the overall success of trials. Thus, patient-centric drug development is now becoming the model that the industry is following. Today, patients are aware, technology-driven, and informed-driving the change in mindset and the way clinical trials are being approached and conducted.

Martin Mendoza

Dr. Martin Mendoza serves as the Director of Extramural Research for the Office of Minority Health (OMH), Office of the Commissioner, FDA. As director of OMH’s extramural research program, Dr. Mendoza oversees all OMH extramural research which includes projects in the FDA Centers of Excellence in Regulatory Science and Innovation (CERSI) cooperative agreements with Johns Hopkins University, the University of Maryland, Stanford University, the University of California San Francisco, Yale University, and Mayo Clinic. Dr. Mendoza has spoken before Congress in support of OMH’s programs and mission, has authored numerous Congressionally-mandated reports, and is also the primary author for OMH’s recent FDA guidance document Collection of Race and Ethnicity Data in Clinical Trials.

Prior to joining the FDA, Dr. Mendoza spent several years in the Office of Clinical Research at the National Institute of Neurological Disorders and Stroke (NINDS), NIH. There, he was part of programmatic management for all NINDS-sponsored clinical trials and oversaw the institute’s Congressionally-mandated reporting of women and minorities in clinical research. Previously, Dr. Mendoza was an active researcher within the NIH intramural research program, conducting laboratory-based research at the National Cancer Institute, the National Institute on Aging, and the National Human Genome Research Institute where he served as a genetic mapper for the Human Genome Project. Dr. Mendoza is a graduate of the University of Maryland Baltimore County and received his doctorate in cancer biology from Johns Hopkins University.

John Whyte

John Whyte
Director, Professional Affairs and Stakeholder EngagementFDA

Adam Amdur

Adam Amdur
Chief Patient OfficerAmerican Sleep Apnea Association

ADAM AMDUR was first diagnosed with severe obstructive sleep apnea (OSA) in 2008, more than thirty years after he first showed symptoms. As he struggled to learn how to manage this chronic illness, he was able to successfully identify the early symptoms and seek treatment for his then two-year-old daughter. In 2012 Amdur first joined the only existing national patient advocacy association, the American Sleep Apnea Association (ASAA), to learn everything he could to help himself and his daughter. Eventually he took the lead in the association’s evolution from a twenty-five-year-old physician-run organization into an entrepreneurial patient-driven, public-health advocacy association. The ASAA launched a new crowd-sourcing campaign, #Sleeptember.Org, in Fall 2015, which tackles long-term recruiting, retention, and sustainability efforts for patient-powered research activities utilizing all relevant channels of social media and technology.

Amdur was the first Patient Principal Investigator and co-founder of the Sleep Apnea Patient-Centered Outcomes Network (SAPCON), funded as part of the Affordable Care Act’s national Patient Centered Outcomes Research Network PCORnet. He worked to bring together patient leaders from each patient-powered research network (PPRN) and clinical data research network (CDRN) at a special patient retreat in order to discover a common patient voice as it relates to research best practices and collaboration with diverse stakeholders. He is also participating on the Clinical Trials Translation Institute (CTTI) issues surrounding the use of mobile devices in clinical trials. CTTI is the non-profit arm of the FDA.

Amdur is also one of the founding investigators of the SleepHealth Apple ResearchKit Mobile Study powered by IBM Watson HealthCloud and a co-investigator on the O2VERLAP Study with COPD Foundation and the American Sleep Apnea Association funded by the PCORnet PPRN Demo award.

Amdur has given presentations at both community and professional conferences as a patient advocate including the National Institutes of Health’s Workshop of the Precision Medicine Initiative. Most recently, he participated in the Everyone Included White House Medx meeting and appeared in many print and live news interviews presenting the patient’s perspective on research and advocacy.

Adam is also currently writing a dynamic and interactive memoir, Asleep at the Wheel: Living with Sleep Apnea, in hopes of putting a face to this disease to better educate the public about its cause and treatment and promote research in collaboration with www.MetroDigi.com

Michael Curry

Linda Deal

Linda currently serves as PCOA Lead working across Pfizer’s therapeutic categories addressing efforts to develop, validate and use clinical outcomes assessments (COAs) as endpoints for providing evidence of medical treatment benefit, product differentiation, labeling and value. Linda has served patients and the pharmaceutical industry for the past 20 years in similar roles at Wyeth, Janssen, Shire and Pfizer. Linda has developed and/or validated dozens of COAs across multiple therapeutic categories including Rare Disease, Neuroscience, Gastroenterology, Pulmonology, Dermatology, Rheumatology and Women’s Health. Linda is trained as a statistician (North Carolina State University).

In her position, she manages an international team accountable for Sanofi’s development stage portfolio overseeing protocol optimization, global trial feasibility, competitive intelligence, the global investigator network and patient partnerships supporting an informed R&D model.

She and her team are responsible for ensuring collaborations with patient groups, as well as clinical trial physicians and coordinators, for protocol design considerations and robust patient community engagement strategies. She also has a large focus on clinical trial innovation ranging from technology to competitive intelligence to adequately inform decisions and patient facing activities. Their primary mandate is to optimize clinical trials from all aspects related to patients and investigator sites so that meaningful medications can come to market sooner.

Vicky has over 20 years of global experience ranging from phase I-IV drug development in rare disease biotech and multi-therapeutic specialty large pharma. She’s worked across multiple platforms such as devices, small molecules, biologics and gene-therapies.

Vicky is a frequent speaker at international industry conferences and is repeatedly quoted in industry publications related to clinical trial innovation and patient collaboration. In 2013 she was listed as one of CenterWatch’s Top 20 Innovators changing the face of clinical trials. In 2014, she was featured in the Wall Street Journal and has guest lectured on the role of patient, investigator and industry collaborations. She is a volunteer for the Michael J Fox Foundation for regional public engagement, a Research Ambassador and Team Fox co-captain. She also is a volunteer advisor for the Critical Path Institute (Parkinson’s).

Vicky holds a Master’s in Public Health and a Bachelor of Science in Nursing.

Jennifer Dudinak

Jennifer Dudinak, Pharm D is Vice President Global Regulatory Affairs Oncology and Head, Pharma Regulatory Therapeutic Teams at GlaxoSmithKline. Her primary strategic focus is to lead global regulatory therapeutic teams across the R & D portfolio and Franchises to deliver innovative global regulatory strategies and drive development and implementation of policies and strategies for optimization of drug development. Jennifer has worked across all phases of drug development, including small molecules and biologics, for over 20 years. She has held multiple senior leadership roles in regulatory across a variety of disease areas (e.g. oncology, virology, immuno-inflammation, ophthalmology) with an emphasis on precision medicine and development of novel approaches to advance regulatory pathways. Jennifer has overseen numerous global regulatory filings and approvals in her career, including NCEs, combination therapies and medicines with a companion diagnostics. Jennifer received a Bachelor of Pharmacy and Doctorate of Pharmacy from Rutgers University. Jennifer joined GSK from Roche/Genentech where she served for over 15 years. Prior to that, Jennifer practiced in community, retail and hospital pharmacy as well as a founding member of Heart to Hearts, a non-profit women’s wellness organization with the aim to empower women through education.

Mary Dunkle

Mary Dunkle
Vice President of Educational InitiativesNORD

Mary Dunkle is Vice President of Educational Initiatives for the National Organization for Rare Disorders (NORD), overseeing educational resources for patients, medical professionals and the public.

She joined NORD in 1999 and served for many years as Vice President of Communications, with responsibility for the organization’s website, social media, publications, and research program. Ms. Dunkle has devoted her career to journalism with an emphasis on education and interpreting medical information for a general audience.

Before joining NORD, she was affiliated with The Pennsylvania State University for 11 years and served as Manager of Penn State’s award-winning news bureau and Assistant Director of Public Relations for the university’s 22 campuses.

In addition, Ms. Dunkle has been a Senior Writer for Greenwich (Connecticut) Hospital and Director of Public Relations for Danbury (Connecticut) Hospital.

Lisa Egbuonu-Davis

Lisa is the strategic lead for promoting and building patient centered products, and solutions that fit into people’s lives and improve healthcare outcomes. This includes leveraging current programs such as patient support programs, as well as creation and development of new mechanisms for improving patient outcomes though both internal and external collaborations. Lisa’s role is to build a global platform for patient centered capabilities to catalyze the development, measurement, adaptation, and amplification of solutions that improve outcomes of interest to patients and their families, providers, and payers.

Lisa comes to Sanofi as a pharmaceutical executive with expertise in outcomes research and public health. Most recently, she has been an entrepreneur, catalyzing the development of low cost “disruptive” medical devices to promote public health and a strategy consultant, advising biopharmaceutical companies on product and service development and on evidence generation strategies to meet the needs of patients, providers, payers and policy makers. In Lisa’s previous roles at Pfizer as Vice President of Medical Affairs and Vice President of Global Outcomes Research, she developed evidence from clinical trials, observational studies, and “real world” analyses to support product value assessment throughout the product lifecycle as well as customer-based assessment of both products and services. Additionally, she has created innovative patient focused, multi-sector partnerships to promote health care access, quality and outcomes in numerous populations, ranging from maternal and infant health to the elderly.

Lisa has a B.S. in Biology from the Massachusetts Institute of Technology (M.I.T.) and an M.B.A. in health care management from Wharton School of the University of Pennsylvania; she earned an M.D. and M.P.H. degrees from Johns Hopkins and is board certified in pediatrics.

Emmanuel Fombu

Emmanuel Fombu
Medical Director and CV Digital Medicine Lead Novartis

EMMANUEL FOMBU MD, MBA is a physician, entrepreneur, medical futurist, patient advocate, author, speaker and innovative healthcare executive with vast experience in venture capital, private equity, medical affairs and clinical development in the pharmaceutical, device, imaging and molecular diagnostics industries as well as bringing quality experience to healthcare delivery. He is an adamant advocate for value-based healthcare and a leader in the design and execution of clinical trials using innovative digital technology to evaluate complementary health approaches and their integration into real world health care. He is also passionate about patient education, mhealth, real world evidence generation, personalized medicine, genomics, nanotechnology, big data, artificial intelligence, machine learning, internet of things, blockchain technology and digital medicine. Dr Fombu is also an external advisory board member on nanotechnology at the Massachusetts Institute of Technology’s MIT.nano project.

Dr Fombu did his clinical training at Emory-Crawford Long Hospital and holds an MBA from both the Cornell SC Johnson College of Business in Ithaca, NY and Smith School of Business at Queens University in Ontario, Canada. He lives in New York City.

Cindy Geoghegan

Cindy Geoghegan
CEO Patient and Partners LLC

Jayne C. Gershkowitz

Jayne C. Gershkowitz
Chief Patient AdvocateAmicus Therapuetics

Jessica Grossman

Jessica Grossman, MD
Chief Executive Officer Medicines360

Jessica Grossman, MD is the CEO of Medicines360. She has been a board member of Medicines360 since 2011. Dr. Grossman is a seasoned industry executive with a proven track record leading successful women’s health companies.

As a medical technology executive, she brings a wealth of experience in product development and commercialization and the ability to accelerate profitable business models.

Prior to joining Medicines360, Dr. Grossman served as president and founding CEO of Sense4Baby, Inc., where she closed a $4-million series A investment and within 18 months of joining the organization, led the company to a successful acquisition following FDA clearance, CE mark, and early commercialization.

Dr. Grossman was also Founder and President of Gynesonics, an early stage medical device company focused on minimally invasive solutions for women’s health, where she raised over $22 million in venture capital financing. Under her leadership, she invented and developed the first intrauterine ultrasound guided radiofrequency ablation device for fibroid tumors.

She has also been a Medical Director at Ethicon Endo-Surgery, part of the Johnson and Johnson family of companies. Dr. Grossman holds numerous patents and has published several peer reviewed articles. She has performed research at the Beth Israel Deaconess Medical Center, one of the teaching hospitals of Harvard Medical School.

Dr. Grossman earned her MD at Thomas Jefferson University and her undergraduate degree with honors from Brandeis University.

Todd Hobbs

Todd Hobbs, MD
Chief Medical OfficerNovoNordisk

Todd Hobbs, MD, is vice president and chief medical officer for Novo Nordisk in North America, where he leads the organization’s focus on the implications of diabetes for the patient, healthcare system and healthcare professionals.

Dr. Hobbs provides overall medical guidance to Novo Nordisk’s diabetes- and obesity-related projects. He provides input into the clinical development and life-cycle management strategies for diabetes and obesity, as well as medical input into the R&D pipeline. He is involved with the optimization of relationships with top key opinion leaders and medical societies, and provides guidance to and participates in consultant advisory boards and key patient and professional associations and top thought leaders in diabetes.

Dr. Hobbs began his career at Novo Nordisk in 2004 as a field medical scientific director, then moving to the position of senior medical director, diabetes, in 2010. He led the Medical Affairs activities for all of Novo Nordisk’s current insulin products and devices, as well as supporting future insulin products through strategic and tactical activities.

In 2016, he started a 3 year term serving on the board for the American Medical Group Foundation (AMGF), the research foundation arm of the American Medical Group Association (AMGA).

Prior to working at Novo Nordisk, Dr. Hobbs had established a clinical practice based in Louisville, Kentucky, focusing on the intensive management of patients with diabetes of all ages, and served as chairman of the Medicine Department for a large Regional Medical Center in Kentucky. During this 10-year clinical career, he cared for more than 2,500 adults and children with diabetes, including outpatient and inpatient care, as well as intensive care.

Dr. Hobbs’ has a unique perspective on and personal dedication to the treatment of diabetes: his own experience with the disease began more than 25 years ago when he was diagnosed with type 1 diabetes. His passion for defeating the disease intensified even more with the diagnosis of one of his sons with the same condition at the age of five.

Usman Iqbal

Usman Iqbal is a Senior Director, Medical Affairs & HEOR at Trevena, Inc. Usman has 12+ years of diverse experience spanning clinical medicine, R&D/Med AFF, Health economics & outcomes research across academia and biopharmaceutical. His experience spans number of different therapeutic areas including Neuroscience, as Senior Medical Affairs Leader at AstraZeneca, and Oncology, as former Head of Sanofi Oncology, Global Evidence & Value Development (GEVD). As part of both R&D and Med Affairs in different bridging roles, Usman has had been responsible for Portfolio Prioritizations, Patient centric trial designs, Integrated Medical Affairs Planning, and end-to-end Evidence generation based on Multidisciplinary Stakeholder engagement (Patient, Provider, Payer), Market insights and Relative Medical Value Assessment Platforms. Prior to working in the industry that also includes Amgen and Boehringer Ingelheim, Usman was at the Boston University Health Outcomes Technology Group as a senior research fellow and served as a research consultant for Veterans Affairs Pharmacy Benefit Management (VA-PBM), the Centers for Medicare &, Medicaid Services’ Health Outcomes Survey Initiative (CMS-HOS), the Agency for Healthcare Research and Quality (AHRQ), and the National Committee for Quality Assurance (NCQA). Usman has authored more than 50 publications and his research experience encompasses patient & physician evaluations in BIG Data and large integrated health care systems with a specific focus on comparative effectiveness, patient centered outcomes, physician profiling, and patient access solutions. Usman received his MD from Allama Iqbal Medical College, Lahore, Pakistan and Master of Public Health and Master of Business Administration from Boston University.

Larry Kaiser

Larry Kaiser
CEO Temple University Health System

An internationally renowned thoracic surgeon, researcher, author and academician, Larry R. Kaiser, MD, is the leading health sciences executive at Temple University in Philadelphia, PA. He serves as CEO of the Temple University Health System, Senior Executive Vice President for the Health Sciences, and Dean of Temple University School of Medicine. Prior to joining Temple University Dr. Kaiser was the President of UTHealth, the University of Texas Health Science Center at Houston from 2008 until April 1, 2011.

Dr. Kaiser graduated from Tulane University School of Medicine in 1977 and completed his internship and residency in General Surgery as well as a fellowship in Surgical Oncology at the University of California (Los Angeles). He then completed a residency in cardiovascular surgery and thoracic surgery at the University of Toronto. Following that, he served as a thoracic surgeon at Memorial Sloan-Kettering Cancer Center and Assistant Professor of Surgery at Cornell University Medical College (New York) and was then recruited to Washington University School of Medicine (St. Louis) where he was promoted to Associate Professor of Surgery in 1990.

In 1991, Dr. Kaiser was recruited to the University of Pennsylvania (Philadelphia) where he held a succession of positions of increasing responsibility, including Associate Professor of Surgery, Chief of General Thoracic Surgery, Founder and Director of the university’s lung transplantation program, and Director of its Center for Lung Cancers and Related Disorders. In 1995, he was promoted to Professor of Surgery and in 1996 was named the Eldridge Eliason Professor of Surgery, the first individual to hold that chair. In 2001, following a national search, he was named the John Rhea Barton Professor and Chairman of the Department of the Department of Surgery at Penn.

In 2008, Dr. Kaiser was selected as the President of the University of Texas Health Science Center at Houston. There, he was responsible for six schools, more than 10,000 faculty and trainees, and a 900-member physician practice.

Dr. Kaiser’s research and clinical interests include lung cancer, malignant mesothelioma and mediastinal tumors. He is the author or co-author of 14 books and over 250 original papers.

Dr. Kaiser has served in a number of leadership capacities for professional societies and associations, and has been a director of the American Board of Surgery and the American Board of Thoracic Surgery. In 2004, he was elected to the Institute of Medicine of the National Academy of Sciences. His recent honors include citations in Castle Connolly’s “America’s Top Doctors for Cancer” 6th edition, Who’s Who in the World, and Philadelphia Magazine’s “Top Docs,” among others.

Helen Kellar-Wood

Helen has more than 15 years’ experience in in the Pharmaceutical industry, working for several companies and academic institutions in both the UK and the US. Helen joined Bristol-Myers Squibb almost five years ago, and transitioned her career from a director in public affairs and corporate communications to advocacy relations and patient engagement. Currently, Helen leads advocacy, diversity and patient engagement strategy for Bristol-Myers autoimmune and oncology portfolio in R&D. Helen interacts with a broad variety of patient facing organizations and groups to identify collaboration opportunities in order to better understand and incorporate patient, caregiver and advocacy perspectives in clinical studies.

Helen completed his undergraduate studies at the University of Southampton, U.K., and received her Ph.D. from the University of Cambridge, U.K., studying the molecular genetics of Multiple Sclerosis in the Department of Medicine.

Fran M. Kochman

Fran Kochman is the Director, National Advocacy and Alliance Development, for GlaxoSmithKline, a science-led global healthcare company dedicated to improving the quality of human life by enabling people to do more, feel better and live longer.

Fran is responsible for developing and leading the Federal Government Relations Advocacy strategy and execution in alignment with key stakeholders, in order to shape and influence the external healthcare environment within the Respiratory Community, and working with Professional Associations, and Business Coalitions. Previously, she had worked in a similar role, within the Oncology Community.

Prior to her current position, Fran was a Regional Account Director, responsible for Medicaid and Public Payers and Senior Manager, State Government Affairs Advocacy helping customers remove barriers and access medicines in the Public Sector, and garnering support for state legislative priorities by developing relationships and building coalitions with patient advocacy organizations and professional associations in New York and New England.

Fran has also held several other positions during her 30-year tenure at GSK, which include Sales Representative, Sales Trainer, Hospital Sales Representative, District Sales Manager, Market Development Manager, and Sr. Manager of Healthcare Education.

Prior to joining GSK, Fran attended the University of Rhode Island, where she completed a National Pharmaceutical Council Industry Internship Program and earned a B.S. in Pharmacy.

Jake LaPorte

Jake LaPorte
Head of Digital Development Novartis

Jake LaPorte is Head of Digital Development at Novartis and responsible for leading the company’s digital efforts within their Global Drug Development organization. Jake began his career at McKinsey & Company, where he was a leader in their Pharmaceutical R&D practice, during his six-year tenure, developing an expertise in large, complex transformations and innovation. It was on a fateful, extended journey in Asia-Pacific, however, where Jake read Ray Kurzweil’s The Singulatiry is Near and became captivated by the possibility of digitizing the Pharmaceutical R&D engine – he has focused his career on the realization of this concept ever since. Subsequently, he co-founded Snapdragon Chemistry, with the Head of the Chemistry Department at MIT, which seeks to enable companies to implement continuous flow chemistry in discovery, development and manufacturing, with the ultimate goal of fully digitizing chemical synthesis. Snapdragon Chemistry was recently recognized by Launch.org as a top 5 innovator in Chemistry and was joined by multi-billion dollar companies such as Dow Chemicals and Wiley Sciences. Prior to joining Novartis, Jake held various leadership positions at PPD, Inc, where he collaborated with executives to develop and implement C-level, strategic initiatives, including a long-term transformation to create industry-leading approaches to clinical development in key therapeutic areas.

Jake completed his PhD in Organic Chemistry from Harvard University, where he was an HHMI doctoral fellow, and received his BSc in Biochemistry and Mathematics, summa cum laude, from the University of Delaware.

Pablo Lapuerta

Pablo Lapuerta
Chief Medical Officer Lexicon Pharmaceuticals

Sara Latham

Sara Latham is the Chief Operating Officer and Executive Vice President of Global Strategy at the COPD Foundation, a nonprofit organization dedicated to improving the quality of life for those affected by chronic obstructive pulmonary disease (COPD), a progressive lung disease affecting more than 30 million Americans.

In addition to overseeing the Foundation’s care delivery, education, communications and community outreach departments, Ms. Latham spearheaded the strategic development and launch of COPD360social, a digital collaboration platform, uniting patients, family members, caregivers and medical professionals in the form of a novel online social community composed of 32,000 members in over 120 countries. Ms. Latham is also responsible for COPD Global, the Foundation’s newest initiative seeking to unite global advocacy organizations in a common mission of raising awareness of chronic obstructive pulmonary disease worldwide.

Prior to joining the COPD Foundation, Ms. Latham worked in various positions in the healthcare, nonprofit and technology sectors for international global communications firms.

Ms. Latham earned a Bachelor of Arts in Art History and European History from the University of Pennsylvania and pursued advanced graduate study at the Johns Hopkins School of Medicine.

Meghan McKenzie

Meghan McKenzie is an Associate Director, Sr. Clinical Program Leader in Genentech’s Research and Early Development (gRED). In Clinical operations, she manages complex programs in neurology, ophthalmology, oncology, rheumatology and immunology and is leading gRED’s Patient Centricity team and the work-life integration team. gRED’s Patient Centricity vision is to empower Early Clinical Development to obtain and amplify the patient voice to improve development planning, trial design, and trial execution.

Meghan has worked across all phases of drug development for over 20 years in clinical operations, data management and as a site study coordinator.

Meghan received her Bachelor’s in Economics at UNC- Chapel Hill and her Master’s in Biology: Human Physiology at San Francisco State University. Before joining Genentech in 2005, Meghan held various positions at a CRO, a research site, at NASA in their Human Research Center as well as at nonprofit think tanks in Washington, D.C.

She and her husband (a veterinarian) have two dogs, a snake, and they enjoy music and extensive travel with their 17-year old daughter, when they can get her attention.

Martin Mendoza

Dr. Martin Mendoza serves as the Director of Extramural Research for the Office of Minority Health (OMH), Office of the Commissioner, FDA. As director of OMH’s extramural research program, Dr. Mendoza oversees all OMH extramural research which includes projects in the FDA Centers of Excellence in Regulatory Science and Innovation (CERSI) cooperative agreements with Johns Hopkins University, the University of Maryland, Stanford University, the University of California San Francisco, Yale University, and Mayo Clinic. Dr. Mendoza has spoken before Congress in support of OMH’s programs and mission, has authored numerous Congressionally-mandated reports, and is also the primary author for OMH’s recent FDA guidance document Collection of Race and Ethnicity Data in Clinical Trials.

Prior to joining the FDA, Dr. Mendoza spent several years in the Office of Clinical Research at the National Institute of Neurological Disorders and Stroke (NINDS), NIH. There, he was part of programmatic management for all NINDS-sponsored clinical trials and oversaw the institute’s Congressionally-mandated reporting of women and minorities in clinical research. Previously, Dr. Mendoza was an active researcher within the NIH intramural research program, conducting laboratory-based research at the National Cancer Institute, the National Institute on Aging, and the National Human Genome Research Institute where he served as a genetic mapper for the Human Genome Project. Dr. Mendoza is a graduate of the University of Maryland Baltimore County and received his doctorate in cancer biology from Johns Hopkins University.

Doug Noland

Doug Noland
Executive Director, Patient ExperienceAstellas

Liz Roberts

Liz Roberts
Global Lead Transparency & Data SharingUCB

Liz is Senior Director, Global Lead, Transparency and Data Sharing at UCB. She relocated from the UK to the US in 2009 and is currently based in Maryland. She is responsible for establishing the strategic framework, guiding principles, and corporate policies that inform transparency and responsible data sharing. In addition, she is responsible for aligning best practices that will enable current and future global disclosure requirements including Global Clinical Trial Registration & Results Disclosure, Clinical Data Sharing, Lay Summaries, and other Transparency-related activities. Liz represents UCB on the TransCelerate work-stream for Clinical Data Transparency and led its sub-team focused on Data Anonymization. She is also involved with sharing data for secondary research via ClinicalStudyDataRequest.com (CSDR). Prior to this role in Transparency, Liz had more than 20 years’ experience working as a biostatistician in the pharmaceutical industry, and has an MSc in Applied Statistics.

John Rother

John Rother
President and CEO National Coalition on HealthCare

John Rother is President and CEO of the National Coalition on Health Care, America’s oldest and most diverse group working to achieve comprehensive health system change. The Coalition’s membership of more than 80 participating organizations includes medical societies, businesses, unions, health care providers, faith-based associations, pension and health funds, insurers, and groups representing consumers, patients, women, minorities, and persons with disabilities.

Prior to joining the Coalition in 2011, Mr. Rother served as the longtime Executive Vice President for Policy, Strategy, and International Affairs at AARP. There he led the development of AARP’s policy positions and advocacy strategies. Under his leadership, AARP engaged in robust public policy research and analysis, public education, and advocacy on health and retirement issues at the federal, state and international levels. Mr. Rother wrote numerous articles and was a frequent speaker on health, retirement security, the federal budget, and the boomer generation.

From 1981 to 1984, Mr. Rother was Staff Director and Chief Counsel for the U.S. Senate Special Committee on Aging under the direction of Chairman John Heinz (R-PA). From 1977 to 1981 he served as Special Counsel for Labor and Health to U.S. Senator Jacob Javits (R-NY).

Mr. Rother is a graduate of Oberlin College and the University of Pennsylvania Law School. He is a member of the DC Bar, the National Academy of Social Insurance, and the Gerontological Society of America.

In 2010 Mr. Rother received the Robert Ball Award for Outstanding Achievements in Social Insurance from the National Academy of Social Insurance for “lifetime advocacy to strengthen Social Security and Medicare.”

Mark Schoeberl

As Executive Vice President of Advocacy and Health Quality at the national center of the American Heart Association, Mark Schoeberl is responsible for the overall strategic direction of the Heart Association’s public policy efforts including policy research and development of organizational position statement, legislative and regulatory affairs at the state and federal level, and community-based advocacy initiatives including Voices for Health Kids, a Robert Wood Johnson Foundation funding initiative to address childhood obesity. Mr. Schoeberl also leads the Association’s health care systems and clinical quality improvement initiatives, including the AHA’s award-winning flagship Get with the Guidelines program to improve in-hospital cardiovascular and stroke care, Mission:Lifeline targeting pre-hospital systems of care, and collaborative efforts with the Joint Commission and American College of Cardiology to provide disease-based certification programs to identify centers of excellent in cardiovascular and stroke care.

Mark is the member of the Public Affairs Council board, immediate past chair of the Campaign to End Obesity (Washington, DC), past chair of the National Forum to Prevent Heart Disease and Stroke (Atlanta), and served as a consumer representative for the National Association of Insurance Commissioners.

Prior to joining the AHA in 2002, Schoeberl was deputy director and chief of staff at the Iowa Department of Public Health.

Schoeberl, an Iowa native who now resides in Plano, Texas, received a Bachelor’s of Arts in Political Science from Simpson College (Indianola, Iowa) and a Master’s of Public Administration from Iowa State University.

Douglas Stover

Douglas Stover
Vice President Patient Experience UCB

Douglas Stover joined UCB in 2016 to lead the Patient Experience and Value Mission for the Global Neurology Patient Value Unit.

Prior to joining UCB, Douglas spent 10 years with Gallup, a research based consultancy, where he served as a strategic advisor to clients building customer focused cultures. During his time a Gallup, he was also responsible for the overall success of the joint venture between Gallup and Healthways, Inc., whose mission was to redefine how individuals, organizations, communities and countries measure and manage well-being. Previous experience includes senior positions at The Advisory Board, OgilvyOne and ICG Commerce.

Douglas received his Bachelors of Science from the Pennsylvania State University and Masters of Business Administration from Georgetown University.

Marla Jan Wexler

Marla Jan Wexler
Patient and CreatorLuckFupus

Marla Wexler is 35 years old, was born with a complex congenital heart defect, and had 4 open-heart surgeries by the time she was 6. She went from pediatric cardiac ICU patient to pediatric cardiac ICU nurse until being diagnosed with systemic lupus erythematous (lupus). Due to complications from the disease, she was forced to put her nursing career on hold. Since 2008, Marla has been diagnosed with lupus and multiple rare autoimmune diseases, cervical cancer, and lobular carcinoma in situ.
She’s the creator and author of the blog Luck Fupus (www.luckfupus.com) which she writes about the day-to-day and long-term struggles of living with multiple chronic illnesses. She’s known for her humorous, keep-it-real style of writing. Her blog was used as a platform to help her become a patient leader and influencer, and Marla now travels the country attending healthcare conferences, speaking publicly sharing her story, educating and advocating for patients across the globe.

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